Endometriosis: The suffering is real

Menstrual pain? Pass by. But if they severely affect life, that's not normal. Every tenth woman suffers from endometriosis. Most do not know.


As a doctor, I abandoned myself or was it my job that failed me? It was not until I was 36, when I did not get pregnant, even though we had tried for over a year, that I finally turned to a specialist and was diagnosed with endometriosis. In the two decades before, I had regular severe pain in my chest. The first severe discomfort that I can remember was when I was 16, during an art exam. In the following years a period became more and more painful.

My mother was amused when I asked if contractions were comparable to menstrual pain. For me, on the other hand, during the first few days of menstruation, bowel movement felt approximately sotraumatic, as I imagined the birth process, and it was only through rhythmic breathing that he got over. When I became sexually active in my late teens, I started to take the pill, which proved to be an advantage. As a medical student, I found out that if I skipped the pill-free week and took the pill continuously, I could block the pain for a period of three, sometimes four months. In fact, in addition to anti-inflammatory analgesics, this is the mainstay of conventional treatment.

Seema Basil studied medicine in Dundee, Scotland, and worked as a UK doctor for several years before moving to Australia. There she works in a medical institution for Aborigines. After endometriosis treatment, she has had a daughter and twin sons using artificial insemination. She is a guest author from "10 to 8". © private

Within the medical profession, there is a lack of sensitivity to the issue of dysmenorrhea, the medical term for menstrual pain. Women who, like me, for some reason treat their period as very painful, are treated as special cases with a disproportionately low pain threshold. Often the affected women are subject to a tendency to drama. Periodic pains are not considered legitimate complaints that can bother his doctor.

However, endometriosis is not a mental disorder. It is a physical disease process characterized by abnormal colonization of cells similar to those of the endometrium, the lining of the uterus, in parts of the body in which they should not occur. This may involve the ovaries, uterine muscles, the fallopian tubes, the colon, the bladder, the peritoneum, and even more distant body parts. I remember that during my studies this disease was mentioned only as an anecdote about a patient with endometrial cells in the nose. She always got nosebleeds when she was menstruating.

The main symptoms are menstrual pain, pain during sex, ovulation, bowel movements, urination, lower back and thigh pain, nausea and lethargy, and decreased fertility. With each period of which the patient suffers, the disease progresses, resulting in abdominal adhesions and the development of scar tissue in the basin area. The key is to reduce menstruation to mitigate the effects of endometriosis. This can be done by prescribing hormones such as birth control pills, by pregnancy (although up to 50 percent of women with endometriosis have fertility problems) and, as a definitive solution, by removing one ovary or uterus.

An estimated 10 percent of the female population suffer from endometriosis. How many of them experience relationship problems due to painful intercourse? How many of them suffer from mental pain because they can not get pregnant naturally? How many of them have increased financial burdens due to downtime at work or because of the cost of their fertility treatments?

A 2011 study on the impact of endometriosis on quality of life and work productivity in ten countries estimated the average delay in diagnosis to be 6.7 years. Other sources report for up to twelve years. The annual cost of work-in-progress due to endometriosis, taking into account not only absences but also reduced work capacity, ranges from $ 208USD per person in Nigeria to $ 23,712 in Italy. In 2016, a systematic analysis comparing the direct and indirect annual costs of endometriosis (such as treatment costs and absenteeism) and unemployment due to this disease yielded sums between $ 3,314 per woman in Austria and $ 15,737 in the United States. In Australia, where I live, there are not even national guidelines for the diagnosis and management of the disease, although an estimated 700,000 women are affected.

A leave of absence during the menstruation remains controversial in most countries. In Japan, it was introduced in the twenties, the corresponding legislation came into force in 1947. Other Asian countries, such as South Korea, Taiwan and Indonesia, also accept leave during menstruation. In Italy, an attempt to introduce a law on leave during menstruation failed in 2017. Among the few countries or individual organizations offering any leave of absence during menstruation, some grant sick leave that has not yet been paid for, but only a confirmation by the staff management that the employees are absent during their period.

I was immensely fortunate that the fertility expert I consulted happened to be an endometriosis expert. Diagnosis is difficult without a surgical procedure, a laparoscopy under general anesthesia. There is no blood test that tells you that you have this disease, and in most cases it is undetectable on ultrasound images. Generally, after the first examination, a second surgical procedure is required to specifically address the identified symptoms. My specialist thought that I could be interested in being a doctor for the recordings he made of my heart. Everything was stuck together in a big mess - the ovaries on the uterus, the uterus on the gut - and my uterus had such a backwards slope that even the most robust sperm would have difficulty finding its way without help through this winding path. Only when the gynecologist said the word "serious" to describe the extent of my illness did I finally believe that my suffering was real. That I was not weak or pathetic or had shown my pain exaggerated.

The uterus is the outsider among the organs. Some liver, kidney, pancreas have a higher status in the anatomical hierarchy. Ironically, the organ most involved in sex has the status of being unsexy in the medical profession. Yet, it is an organ that struggles from menarche to menopause, month after month, repairing itself, waiting with a steadiness for the one chance to show its true value. To enlarge, extend his muscle fibers, and pick up and nourish an embryo that develops into a new life, then modestly shrinking back to its usually unimproved size and restarting its patient preparations. How could it be that the disease endometriosis, which is so often associated with the uterus, has so little attention so far?

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If there had been a message that would have kept me from years of silent suffering, from the tears and pain that had paralyzed me so often, from the shame of being hypersensitive, from patient consultation with warm water bottles secretly hidden under my clothing, she would have said: Period pain that affects the quality of a woman's daily life is not normal, get help! Fortunately, this is finally more readily available.

Translated from the English by Barbara Wiebking

REF: https://www.zeit.de/kultur/2019-02/endometriose-unterleibserkrankung-frauen-gebaermutterschleimhaut-chronische-schmerzen-diagnose